CFS: Improvment on VALTREX

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Jun 1, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i have been on valtrex 1 g 4 times a day for about a month and am experiencing a 5% sustained improvement.

    i did not experience any sustained improvement on valcyte and i was on that for quite a this is interesting.

  2. erica741

    erica741 New Member

    Hi Sue, I am so happy for you! Maybe you are improving now because you have stopped working and are resting?

    Your recent improvement does again bring up the question of Valcyte versus Valtrex for EBV. I am assuming you have not heard back from that "EBV expert" in Canada?

    I know you have been sick a long time, so this improvement is very promising. I truly hope it continues!

  3. dhamma

    dhamma New Member

    Wow Sue, this is really good news! Seems like you've tried everything, glad you've finally found something that's helping. Hoping and praying that your improvement continues.
  4. ladybugmandy

    ladybugmandy Member

    thank you all for the good wishes. the improvement is very slight...but it is there. i have real hope for the 1st time.

    erica....there is no doubt the resting is helping a lot...but i took valcyte for 1 1/2 month (i think) after i stopped working and before i began valtrex, and did not get better at all....only worse i think.

    yes....this definitely makes me wonder about the valtrex being better for ebv. i have written on my to-do list to call that expert tomorrow. if i cannot speak to him, i will give you his name and perhaps someone else will have better luck.

    i felt that my problem was ebv for 15 yrs even though most antibody tests wouldn't show it. someone said that dr. lerner said that using igg antibodies as a diagnostic tool was "useless".

    znewby....there are many options for people who cannot afford valtrex. glaxosmithkline has many programs. please see the most recent post by 28years.

    good luck everyone and thanks!!

  5. kevinguibara

    kevinguibara New Member

    I took valtrex for two months and half way through a pharmacist told me to get 1 week supply at a time and my insurance would pick it up with only a co pay. I was taking 4-1g pills per day

    The first month cost me $1k plus, but the second month cost me $120 (four $30 co pays)

    I am not sure if this has to do with my insurance (blue cross) or the dosing schedule with valtrex, but its worth a try
  6. marti_zavala

    marti_zavala Member

    I take acyclovir as my insurance would not pay for Valtrex (I could try the pharmacist's suggestion).

    But I am very happy with the acylovir as I would be bedridden without it.

    I pay $16 a month at Walmart ($4 for 4 prescriptions) since I take 800mg a day.

    Just an option for those who can't afford Valtrex.

  7. chrissy12

    chrissy12 New Member

    i am happy to hear you are improving.. That is really encouraging... Stay in touch. Cindy
  8. acer2000

    acer2000 New Member

    Hope you continue to improve. I guess it just goes to show how crappy testing is and how we just need to keep trying something until it works!
    [This Message was Edited on 06/02/2008]
  9. gettingwell

    gettingwell New Member

    Hi Sue,

    I rarely write on this board, but I periodically follow everyone's updates. I am particularly touched by your situation because of it's gravity.

    I just logged on to inquire about the effectiveness of Valtrex. I have watched Lerner's videos and seen that he took it for many years (with obviously great success) to treat his chronic EBV. I rarely hear of anyone having EVB exclusively anymore (always in conjunction with HHV6) and so I wonder if he too had HHV6 but never tested for it because it was so long ago.

    In any case, I was going to ask if anyone else has been on Valtrex long term and had success. You are the first to answer my question.

    I truly wish you peace of mind and heart.

  10. Lichu3

    Lichu3 New Member

    As Arsenbl0 says, the testing is not good. Possible that some with HHV-6 have the B version reactivated on the side (not A) and not really a big player for them compared to the EBV.

    Also have come across stuff saying the antivirals (other than acyclovir and its forms) haven't really been tested on EBV since it was thought to be a not very dangerous virus. Certainly, some with non-CFS EBV-related cancers have been helped by Valcyte but it doesn't necessarily follow that ganciclovir will be better than acyclovir drug for all strains of EBV.
  11. fmfriend

    fmfriend Member

    My insuransurance would only pay for one week so my dr RX Acyclovir instead, The pharmacist said Acyclovir is the father of Valtrex.
    I dont take it regularly so I cant realy say hao it works completely although it does take my sore thoat away.
    I need to take it more often and consistatly and keep a jounal. Im realy bad at that because im so sick it takes too much energy.
    keep us updated of your progress.

    Bleessings~ Sally
  12. ladybugmandy

    ladybugmandy Member

    thank you for your post..i had the same thoughts about the EBV/HHV6...time will tell.

    for the people who are having trouble affording valtrex, please call glaxosmithkline...they have several good programs!

  13. pumpkinpatch

    pumpkinpatch New Member

    Good for you!! that is awesome. Uphill 5% is good, that must be so encouraging.
  14. ladybugmandy

    ladybugmandy Member

    thanks, guys. i appreciate the kind words:)


    "Certainly, some with non-CFS EBV-related cancers have been helped by Valcyte"

    i did some research on EBV related cancers and although i did read that antivirals lessened the EBV load in the blood, i read that they had no significant effect on the cancer.....however, i am not sure if i read about valcyte or just valtrex.

    if you have a link about valcyte and ebv-related cancer, would you mind posting it?

    thank you!!

  15. ladybugmandy

    ladybugmandy Member


    no i cannot get a hold of that expert....i even left a message saying that i was given his name by dr. ablashi.

    the expert's name is dr. jose menezes....perhaps you will have better luck?

    thank you!
  16. Lichu3

    Lichu3 New Member

    I don't have any immediate references for you -- just had some notes I took a while back but there are some case reports which seem to back why Montoya thinks Valcyte should hit both HHV-6 and EBV. My mind cannot trace back how I came to those ideas currently.

    But is HHV-6A is the root cause in these folks, perhaps it's enough once it's suppressed for EBV to be handled by the immune system. All speculation on my part.

  17. ladybugmandy

    ladybugmandy Member

    now that the valtrex has just started to work (i hope it continues) i am having a lot of trouble dealing with my anger towards the doctors who laughed at me for 15 yrs when i asked to try acyclovir.

    why why why isn't it common sense that if someone doesn't recover after mono, the virus could still be replicating??

    how can this NOT be common sense????

    why did i have to wait 15 yrs for someone to listen?

    i thought that if i showed signs of improvement, i would be so ecstatic i wouldn't care about anything but moving forward and thanking God....but i find myself so mad a lot of the time.

    this was totally needless suffering....not to mention the permanent damage that may have been done to my body.

    all that time family.

    i wish there was someone i could sue!
    [This Message was Edited on 06/04/2008]
  18. marti_zavala

    marti_zavala Member

    YES! I didn't wait as long as you but yes, how difficult is that.

    Also, frustrating, is the response when you ask to be tested for viruses - why, what is the purpose, there is no medication, so why test!

    Still heard today even with acyclovir and valtrex and valcyte.


    I'm right there with you.

  19. ladybugmandy

    ladybugmandy Member

    hi all. i just wanted to update everyone on my progress. i think the valtrex is continuing to help me....i was at 5-8% improved last time i posted, but i think i might be at 10% now. it is very very slow with one good day and 2 bad days, etc.

    nonetheless, i am very very pleased and hopeful. as you all know, i felt virtually dead before i saw dr. lerner.

    i have been on valtrex for 2 1/2 months now. i was on valcyte for quite a while before that, at varying doses, with no improvement. i have been sick 15 years.

    my most recent antibodies showed EBV EA still elevated at the same level as before the valtrex, but the HHV6 went down from 1:640 to 1:320 (LabCorp).

    dr. lerner took me off valcyte (possibly due to liver enzyme issues) and theorized that my immune system would take care of the HHV6 if the valtrex took care of the EBV. i am thinking he was right....a very intuitive doctor.

    everday, dr. lerner is gaining more and more respect and admiration from me. if i become well, there is no way i could possibly thank him enough.


  20. sascha

    sascha Member

    i am so interested in your progress, and sooooo glad to hear you are making it- finally.

    it's hard to keep people straight on this site- so my recap is (i really relate to your experiences)- i finished valcyte (thank GOD) June 6th. had tough way all through it. started valtrex June 27th. my HHV6 went down from over 10,000 to just over 1,000 from the valcyte. also another virus went way down- but not the EBV- i never tested positive for that.

    i have been frighteningly wasted and weak since finishing valcyte. i'm not sick in the same way as before, but i am appallingly weak. it scares me that i might not regain strength even though i know Dr. Montoya cautions us to give it 12 months post-valcyte for time to rebuild.

    i have brief flashes of feeling quite well, then WHAM, down i go with the wasted weakness. so good to hear you may be climbing out bit by bit from the pit. really glad -

    may it continue until you top it off at 100%! sascha

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